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Quality of life of ALS and LIS patients with and without invasive mechanical ventilation.
[locked-in syndrome]
There
are
very
few
studies
where
quality
of
life
(
QOL
)
is
assessed
in
patients
with
complete
physical
and
functional
disability
and
dependence
to
invasive
mechanical
ventilation
(
IV
)
.
We
compared
QOL
of
amyotrophic
lateral
sclerosis
(
ALS
)
and
locked-
in
-syndrome
(
LIS
)
patients
with
invasive
mechanical
ventilation
to
ALS
and
LIS
patients
without
mechanical
invasive
ventilation
.
Thirty
-
four
patients
,
27
with
ALS
and
seven
with
LIS
(
vascular
or
tumoral
aetiology
)
were
included
in
the
study
.
Twelve
had
invasive
ventilation
,
22
had
non-invasive
ventilation
,
and
in
the
non-invasive
ventilation
group
,
five
of
them
had
ventilation
via
mask
.
The
following
scales
were
used
for
patients
:
ALS
Functional
Rating
Scale
(
ALSFRS
)
,
McGILL
,
Short
-
Form
36
(
SF
36
)
,
Beck
Depression
Inventory-
II
,
the
Toronto
Alexithymia
Scale
and
the
anxiety
inventory
of
Spielberger
.
Mean
ALSFRS
scores
were
significantly
lower
in
the
invasive
ventilation
group
(
IV
)
than
in
the
non-invasive
ventilation
group
.
McGILL
and
SF
36
were
not
significantly
different
between
the
IV
group
and
the
non-invasive
ventilation
group
;
there
were
no
significant
differences
between
the
two
groups
for
others
scales
either
.
Comparison
between
IV
group
and
LIS
without
invasive
mechanical
ventilation
revealed
no
significant
difference
for
SF
36
and
McGILL
QOL
scores
.
QOL
was
not
significantly
different
between
the
IV
and
not
invasively
ventilated
patients
,
but
ALSFRS
was
significantly
lower
in
the
IV
group
,
and
comparison
of
QOL
scores
between
non-ventilated
LIS
patients
who
had
the
same
score
of
dependence
that
invasively
ventilated
patients
did
not
show
any
difference
.
Invasive
mechanical
ventilation
for
patients
who
accept
tracheotomy
allows
life
prolongation
and
their
QOL
is
not
affected
;
medical
teams
should
be
aware
of
that
.
Diseases
Validation
Diseases presenting
"dependence to invasive mechanical ventilation"
symptom
locked-in syndrome
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